--For parents of children and youth with special health care needs (CYSHCN), it is often overwhelming to manage their children's entire universe of care, from traveling to appointments with multiple providers, to administering treatments and medicine, to managing educational needs and making sense of insurance coverage.

In a 2012 survey, families with CYSHCN identified care coordination as their top priority. At its best, care coordination is a covered service-a command center, of sorts-that addresses the interrelated medical, social, developmental, behavioral, educational, and financial needs of children and youth and their families.

Currently, there is great confusion over who is responsible for providing care coordination services, who should pay for them, and how to get reimbursed for such services. As a result of this inefficiency, CYSHCN and their families experience even greater difficulties.

In a new report funded by the Lucile Packard Foundation for Children's Health, The Care Coordination Conundrum and Children and Youth with Special Health Care Needs, authors Sara S. Bachman, Meg Comeau, and Katharyn M. Jankovsky of the Catalyst Center at the Boston University School of Public Health discuss why care coordination has been insufficiently financed and reimbursed to date, and what can be done to address these challenges.

Recommendations in the report include:

Moving care coordination models away from narrowly focused programs and fee-for-service payment in order to achieve long-term financial stability for the service

Developing risk-adjusted models that help level the playing field and ensure that health plans and providers enroll and serve CYSHCN

Linking care coordination to improved health outcomes

Requiring greater accountability in order to better evaluate return on investment

Implementation of these strategies will better support pediatric providers and allow families to more readily access the full benefits that care coordination has to offer, thereby greatly alleviating a significant burden on this vulnerable population.

The Catalyst Center, the National Center for Health Insurance and Financing for Children and Youth with Special Health Care Needs, is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U41MC13618, $473,000. This information or content and conclusions are those of the Catalyst Center staff and should not be construed as the official position or policy of nor should any endorsements be inferred by HRSA, HHS, or the U.S. Government. LT Leticia Manning, MPH, MCHB/HRSA Project Officer.